Life As A Dad, And A Survivor

Archive for the day “January 5, 2018”

The east coast just got hit with a major storm, on top of dealing with already severe cold temperatures. I reside in south Florida, and this was our actual reading at 7am yesterday, and again, this morning.

There are plenty of jokes about Floridians and Californians when we are forced to deal with the cold. And believe me, I get the jokes. I used to make them. But having lived in Florida for a few years now, I now understand just how rough the cooler temperatures are on warmer climates (we are nowhere near dealing with subzero wind chills like up north). My body has been acclimated to gradual dropping temperatures, but only to a certain degree.

My issue is more than just keeping warm though.

Yep. Not normal Floridian attire. But for me, it is necessary.

I have pulmonary issues related to treatments that I received for Hodgkin’s Lymphoma nearly three decades ago. The progressive damage includes radiation fibrosis as well as restrictive lung disease (I only have 75% use of my lungs). Extreme weather conditions have a drastic impact on my lungs so for me, it is about prevention first, treatment if necessary. But here is the catch. There is no treatment.

As you can see, I am wearing a neck scarf, typically I used to wear when I used to ski. I will actually wear this once the temperature drops into the lower 50’s. But I can wear it in the 60’s if wind is a factor. Here is the issue. The colder air, or forced air, in my lungs creates a situation very similar to asthma. The only difference is that an inhaler does not provide any relief. And if I do nothing to reverse what is happening, my lungs actually feel as if they are rocks, making it more difficult to breath. And if I do nothing to reverse what is happening, the situation gets made worse as I usually head towards a full blown panic attack. And it only gets worse from there.

It took a while to figure this issues out. And only after being seen at a survivorship clinic at Memorial Sloan Kettering Cancer Center did I learn what I was dealing with.

More than 20 years ago, I met another fellow Hodgkin’s survivor. She was treated approximately the same time period, and similar modes of treatment. She had these lungs issues. I recalled how hard she struggled with her lungs, and often how painful it was. Often relief was slow and heartbreaking.

Between my friend and my medical team at MSKCC, I learned that I had a similar condition. And since treatment did not provide any kind of relief, the issue became more about prevention.

Before I retired several years ago because of my health, I was constantly seen dressed like the picture above by my co-workers once the temperatures got cooler. My peers often made fun of me, because just a few years earlier, I was known to actually wear shorts through the month of January. And now, if the temperature got into the 50 degree range, I wore a ski mask.

Well, here is what I have to do, if I do not wear the mask. If my lungs are restricting due to the temperatures, I need to get indoors as soon as possible, to a climate controlled environment before I develop the panic attack that is sure to come. Then, I just sit down, and wait. I try to focus on my breathing, waiting for my lungs to warm up, trying to expand my rib cage. This process can take anywhere between a half an hour to 45 minutes depending on how bad the situation got.

This was not a situation my employer was happy with, having to wait for me to begin my work day.

So, the ski mask actually reduces dramatically, the amount of cold air being breathed into my lungs, and reduces any wind forcing the air into my lungs.

This issue also is affected by heat and humidity, but right now, I would just be happy to have our temps back up in the 60’s or 70’s.